Showing posts with label ASAN. Show all posts
Showing posts with label ASAN. Show all posts

Thank you Julia

Thank you for your kind words about me Julia. We are sorry to see you leave ASAN which has been a big part of your life for 12 years. 

 https://autisticadvocacy.org/2023/12/julia-bascoms-speech-for-asan-gala-2023/




ACI Applications now open


 

The Autistic Self Advocacy Network is now accepting applications for the 2023 Autism Campus Inclusion (ACI) Leadership Academy! ACI helps autistic students learn to make their college campuses better for people with disabilities. ACI participants learn about making student groups, understanding disability policy, and talking to people in power. After ACI, students get help from ASAN to meet their advocacy goals at their college. ACI 2023 will be held from July 10th through 19th, 2023.

We hope to hold this year’s ACI program in-person. If it isn’t safe to do so, we will hold the program virtually. Due to the pandemic, we held ACI virtually in 2020, 2021, and 2022. If it is safe to hold ACI in-person, we will take numerous safety and health precautions.

To apply for Autism Campus Inclusion (ACI), you must:

  • Be autistic. You do not have to have an official autism diagnosis to apply.

  • Be a student at a college or university with at least one year left before you graduate.  Students in TPSID programs (Transition and Postsecondary Programs for Students with Intellectual Disabilities), 2-year community colleges, 4-year colleges, and graduate school are eligible to apply.

  • Live in the United States or Canada. This includes all 50 states, all US territories, and all provinces and territories of Canada. (Please note: the policy sections of our program will focus on the United States) You do not have to be a citizen of either the US or Canada.

We especially encourage students of color, LGBT students, low-income students, students with intellectual disabilities, AAC users, and students from other marginalized communities to apply.

To apply, please submit a completed application by Sunday, March 5th, 2023 to Dean Strauss, dstrauss@autisticadvocacy.org.

If you need assistance or accommodations at any stage, or have any questions about ACI, please contact Dean Strauss, dstrauss@autisticadvocacy.org.

Hill Visit Training Webinar

 

These Hill Visits are super impactful. 


Making a virtual visit to your legislator is the most impactful way to make your concerns known. You can virtually meet with your federal legislators to ask them to ban the use of electric shock devices for behavior modification in this year’s end of year omnibus bill! 

 

Learn how to meet with your federal legislators online with our Virtual Hill Visit training! Join us tonight at 7pm EST for a Hill Visit training webinar (Link 1). We’ll go over scripts and tips to take the fight to the Hill and meet with your legislators face-to-face. We’ll also roleplay an example scenario so you can see in real time what it is like to speak with your members of Congress.

 

Register here or tune in on YouTube. (Link 2)

 

Then join us on Wednesday, December 7th (Link 3) for our virtual Hill Day! In order to meet with your legislators on the 7th, you should reach out NOW to schedule something. Check out our guide to learn how to set up a meeting! (Link 4)


1. https://us02web.zoom.us/webinar/register/WN_r1UlilUwRFSefT2y2o1NVw?emci=8f18adc8-806a-ed11-ade6-14cb65342cd2&emdi=84350b61-2d6f-ed11-819c-00224825858d&ceid=7856333

2. https://us02web.zoom.us/webinar/register/WN_r1UlilUwRFSefT2y2o1NVw?emci=8f18adc8-806a-ed11-ade6-14cb65342cd2&emdi=84350b61-2d6f-ed11-819c-00224825858d&ceid=7856333

3. https://www.youtube.com/channel/UC_TYP1RDq76UnlVtSUxCmtA

4. https://autisticadvocacy.org/virtualhillguide/?emci=8f18adc8-806a-ed11-ade6-14cb65342cd2&emdi=84350b61-2d6f-ed11-819c-00224825858d&ceid=7856333


@harisri108 #Redefine_the_Table #autism #belonging

Master of Ceremonies at ASAN Gala 2021





Join us for a special virtual edition of our annual celebration and fundraising event from Wednesday, November 17th through Friday, November 19th. We’re so excited to share the gala with disability community members and allies from across the country and around the world, who usually wouldn’t be able to attend in-person.

We’re happy to announce that Hari Srinivasan will be our Master of Ceremonies!

Image description: A young Indian American man in his 20s with black hair under a white baseball cap. He is wearing jeans and a long sleeved gray shirt that says California Golden Bears. He is standing next to a stone railing.

Hari Srinivasan is a minimally-speaking autistic student at UC Berkeley. He is on ASAN’s Board of Directors and a 2019 alumnus of our Autism Campus Inclusion program! At UC Berkeley, Hari is a student journalist for the Daily Californian, student instructor for a class on autism, research assistant at the UC Berkeley Psychology and Disability Labs, and was the first nonspeaking president of the student group, Autism:Spectrum At Cal. As a Haas Scholar, he is doing research on how autistic people experience awe. Hari was recently selected to serve on the Interagency Autism Coordinating Committee, which advises federal policy and priorities around autism. We are so grateful for Hari’s dedicated advocacy!

Hari hopes to bring attention to issues which impact disabled people in myriad areas and across the lifespan. He also wants to emphasize the urgency to include and address the issues faced by the more marginalized groups and higher support needs within the autism and larger disability community, including their mental, physical healthcare needs and comorbidities. When the voices of select groups get left out of the conversation, it negatively impacts their access to spaces, resources, funding, policy and quality of life.

We are full of autistic awe that Hari will host our annual gala and hope that you can come celebrate with us!

Gala tickets are donate-what-you-can, but no donation will be required to attend our virtual gala events. Proceeds will support our advocacy work and programs for the coming year, and allow us to continue working to empower disabled people across the country. If you’re able, please consider donating to support our work. If you are not able to donate, no worries -- we’re just happy to have you celebrating with us!

Honorees and other programming will be announced in the coming weeks.

You can RSVP to our Facebook event and invite your friends! We’re excited to celebrate together.


A Day in the Life



This was an interview I gave for Zoom magazine. 
Interview Text follows. 

A Day in the Life of Hari Srinivasan, Promoter of Connection,Understanding, and Belonging


Hari Srinivasan is a minimally-speaking autistic advocate and college student at UC Berkeley, California. He works tirelessly as a student, research assistant, and teacher. He is a Psychology major with a minor in Disability Studies, and so far has a 4.0 GPA and is Phi Beta Kappa. At UC Berkeley, he teaches a class about autism, and this summer he will be starting an independent year-long research project on autism as a
Haas Scholar. Hari has a passion for learning about a variety of disabilities, as he feels it helps him understand autism better and gives him a broader perspective on the challenges that many people face.

Hari has been featured on President Obama’s Instagram to help celebrate the 30th anniversary of the ADA (Americans with Disabilities Act) and is a student journalist at the Daily Californian. He’s active on his college campus, even serving as the first nonspeaking autistic president of the student organization Spectrum At Cal, working to expand their outreach efforts and promoting “belonging” over mere “inclusion.” He also serves on the board of ASAN (Autistic Self-Advocacy Network), one of the few
organizations supported by the autistic community, and is a member of the Panel of People on the Spectrum of Autism Advisors (PSA) for the Autism Society of America.

1. What does a typical school/regular day look like for you (or, if there isn't a typical day, describe one that is representative of your life)?

A typical day during the pandemic is a lot of screen time, typing or in Zoom, interspersed with maybe a walk, some exercise, music, TV (more screen time), and staring at the view of the beautiful Bay and the Golden Gate bridge from my window.

2. What hobbies or interests do you have outside of your schooling or work?

Philosophy & creative writing, especially poetry. I have written over 200 poems. Yoga, music, watching football, basketball, cricket, & tennis (I’m learning tennis).

3. How does being autistic help or hinder your work, schooling, or hobbies?

A multi-modal thinking which uses all my senses, not just traditional audio-visual, can be a huge advantage as you are weaving in many streams of thought and consciousness.

The mind is a beauty with its ability to quickly grasp concepts, analyze, appreciate, and enjoy. It's a tremendous advantage to have this mind as I have to spend a majority of the time on the motor output part. For instance, in Calculus the instructor was writing out all the steps on the board. Even as he started, I had the answer, though if someone had asked me to type out all the steps, that would have taken me quite a long time as that is a motor task. I often feel I am on two complete opposite tracks with my mind and body.

If I have to do a motor task, I can get completely lost and disoriented and distracted even between point A and B. Honestly, that part is tremendously frustrating and drags me down and leads to all kinds of anxiety and more “autism behaviors” which further slows me down.

4. What kinds of changes or accommodations do you make in your life to allow
you to be successful?

I think I am still trying to figure this part out (LOL) as my needs go beyond just the communication part, which is hard in itself. I’m constantly having to look for workarounds for each and everything. It's the ADHD, oral-motor apraxia, anxiety, lack of body schema, sensory processing, fine motor issues, body coordination issues, obsessive compulsive behaviors, mood regulation, misc. health issues, allergies, etc.,
all in one package called Hari. There is only so much that goes into the disability accommodations which are very academic oriented. So each day is like a new negotiation with my environment which has been quite the task and frankly quite exhausting. Much of the time, I’m not really feeling all that successful and quite burned out as I am trying to navigate through my maze of a day, day after day.

5. Have you experienced discrimination or bullying because of your autism or autistic traits?

Oh yes, all the time. My disability and “autism behaviors” are all too obvious, much of it quite involuntary, though there are still attempts at masking and camouflaging in other areas. So I can get either completely ignored and excluded or stared at with uneasy or disapproving looks in many places. And that is just the tip of the iceberg. Many, many instances by educators, neighbors, programs, professionals, and just folk on the street.


6. What advice would you give to a young or teenage autistic person to help them live their best life, or what advice would you give an autistic adult to help them feel supported in their continuing journey?

No one is an expert on you. No one knows enough about autism to be an expert. Even
the “experts” are still learning. So no one gets to have final say on what your limitations,
capabilities, & needs are.

7. What advice would you give parents of autistic kids about the best ways to support their kids in becoming their best selves? What advice from the so-called "experts" do you think parents should ignore? How can parents best support their non-speaking or minimally-speaking children?

Communication must extend beyond just basic wants. Basic wants are just survival. The next step up are needs around school/vocational/skills/interests which are necessary for building self-confidence and getting ahead. But real quality of life is the ability to express thoughts and opinions. So aim for that in communication—irrespective of the communication methodology used and whether it’s via speaking or via AAC. On the “experts” part, I would repeat the advice to autistics above.

8. What was one piece of advice you received that helped you be comfortable with who you are?
“The human race is so puny compared to the universe that being disabled is not of much cosmic significance.” —Stephen Hawking

9. How did growing up without feeling represented in media affect you?
OMG. That was the essence of my recent article titled “Boy Like Me” for the Disability Visibility Project.

10. How does being a minimally-speaking autistic person affect your experience in higher education and in your advocacy work?

College has been an amazing experience for me as I have found a very supportive environment and faculty in Berkeley. I don’t know if this is the case in other places though. But for all that I get to do, I realize my college experience will still be just a fraction of that of my NT [neurotypical] peers or even my speaking autistic peers.


11. What kinds of topics do you cover in the college course on autism that you teach?

So it's a combination of lectures, class discussion, student presentations, and guest speakers and panels. I manage to pack in a lot in our weekly 2-hour classes—from history, education, therapies, issues across lifespan (childhood - adulthood - geriatric), autism terminology, disability law, housing, relationships, family dynamics, identity, healthcare, mental health, translational research, law enforcement, tech, representation in media, and a bunch more. The 12-13 weeks of classes each semester are not enough to pack in all the additional topics I would like to cover. It felt so impactful when a former student from Europe recently emailed me to say that takeaways from this class led to her current research work.

12. As one of the board members, in what ways do you contribute to ASAN?

I think I both learn and bring fresh perspectives as a both a minimally-speaking autistic
and a person of color.

13. What are some aspects of advocacy work that you find especially fulfilling?

It is the opportunity, that dream, to make a contribution, even if it's a pebble, that will lend to that huge ripple of change.

On a lighter note, I used to obsessively watch Thomas the Tank Engine as a kid. And Thomas always wanted to be a “useful” engine. I guess I’m being “useful” too, now.
LOL.

14. What would you like to do—given your education, work, and advocacy background—after graduation?

In the immediate future I hope grad school is in the cards for me. I’m passionate about learning and knowledge, and my mind is just thinking all the time and I want to do and contribute so much.

15. How can readers learn more about the experiences of non-speaking or
minimally-speaking autistic people?
 

Are there resources you'd like to point people to, or people online that you recommend following?

Just reading or following what a few of us are writing is not enough. Thought has to translate into action on the ground. Start by interacting with nonspeakers. There will be many in your neighborhood who are getting absolutely ignored or out of sight, tucked away in special education class or day programs. How will you learn unless you interact and start to include? Ask to start buddy programs at school if you are of school age. If a nonspeaker lives on your street, include them in your circle of friends and do things with
them. There are many small things you can do at the grassroots level which together will make a huge difference and normalize the presence of every kind of human being in everyday society.

16. Is there anything else you'd like to share?

While it's nice to see neurodiversity make inroads both in terms of awareness and on the DEI [Diversity, Equity, and Inclusion] front, there needs to be a bigger effort to include the more marginalized groups like minimal/nonspeakers, and their support needs in such measures and conversations.

17. What are the best ways for people to connect with you (if desired—anything you include in this section will be published, so only include information you want public)?  (Email, Twitter, Facebook, Instagram, etc.)

I have a bunch of media for interested folks. I write about many things.

Daily Californian: www.dailycal.org/author/haris/
Twitter/Instagram @harisri108
Facebook Page: 108hari
YouTube: tinyurl.com/108hari
Blog: http://uniquelyhari.blogspot.com
But more than FOLLOW, I want you to think ACTION.



This was part of the series.













 

Making Decisions




'
On Making Decisions about what path to take


Thoughts to mull over!!

One is something that the abolitionist, Frederick Douglass had said about education and knowledge being the key to freedom. This had struck a deep chord when I first heard it. I felt I had to go to college, not just because I loved knowledge and learning, but a college degree would also give me better access to a seat at the table. The table, that is apparently making decisions about me and my fellow autistics.

The second is a line from Robert Frost’s, Two Tramps in Mud Time. “My object in living is to unite my avocation and my vocation.” I too, truly believe that you will be happiest, if your work aligns with what you are passionate about. 

The third is that many people often end up doing something totally different than what they studied in college or imagined they would be doing. And that’s totally ok. You can act only based on your current information, you zig zag a bit, maybe loop a little too. I’ve started off with a Psych major here at UC Berkeley, but who knows what I will end up doing many years later.

-Hari Srinivasan @ ASAN - Transitions to Adulthood







 

Ryan Speaking to Ryan



“I use this text to speaking voice called Ryan. There are only a limited number of affordable natural sounding voices with an American accent, so when two non speaking guys are chatting, it is like Ryan speaking to Ryan, which is very disconcerting; an erasure of the individual.”

-Hari Srinivasan @ASAN’s Transitions to Adulthood, Nov 2020

Transitions to Adulthood Panel - ASAN 2020 Gala


I learned a lot from the others on the Panel and from the audience comments.
Thank you. 
The Autistic Self Advocacy Network
, fellow panelists 
Jordyn Zimmerman
 and audience.
https://www.youtube.com/watch?v=2klBB1Tow4A&fbclid=IwAR2XIoXysvRB-Y-uux8JWzfvJjzUVGodcc2aIxvvgrl8Waj6jibOtOdkEv8 




ACI Experiences




 

Crip Camp Conversations: Disability Leaders Respond to Coronavirus




The Best Audience Chat Comment undoubtedly was
"I feel like my life will now be measured as “pre this talk” versus “post this talk”. Thank you for this!" 

Amazing experience being on the panel for this webinar. Glad to be able to add value to this very important issue. 


I got several requests to share what I'd "talked" about in the webinar. 
Here are the slides and transcript of audio. 

Introduction 



Image Description. Young Indian American male sitting in front of a laptop. Black hair. Wearing a cap and T-shirt that say Berkeley.

Hi everyone. Thank you for having me here. My name is Hari Srinivasan. I’m a non speaking autistic. I type to communicate. I have a bunch of other challenges like oral-motor apraxia, ADHD, OCD, anxiety etc. 

I’m a student at UC Berkeley with a major in psychology  and minor in disability studies. 

This is my third semester as student instructor for a faculty sponsored semester long class on autism. I think of it as a way to change awareness in the way 30 students each semester will come to view disability and autism in their future lives. A majority of the students are non-autistic and able-bodied. We had a very interesting discussion on autism and covid-19 just two weeks ago. 

I’m also a student journalist for the Daily Californian. I get to write about many disability related issues which have included a column on autism. My two recent articles focused on social distancing and on healthcare issues surrounding the disability community during this pandemic. If you google my name and Daily Cal you should find links to these articles. 



I joined the board of ASAN, the Autistic Self Advocacy Network earlier this year. 

As the pandemic unfolded ASAN has really been working with other disability orgs to advocate for our civil rights. An early area was medical rationing, the combined advocacy has lead to non discrimination directives at various levels. But we have to continue to be vigilant that this is translated to in the field. 

ASAN is also branching out now to work on issues like making sure people who need a support person can bring their family member or communication partner with them if they are hospitalized, even if the hospital has a no visitors policy, as a reasonable accommodation under the americans with disabilities act. As a person with high support needs, this is an area close to home for me. 

In terms of home and community based services, ASAN is pushing very hard for the next covid bill to include emergency grants to service providers so that people can be supported in their homes, and to keep people from ending up in congregate settings. To make that possible, support people need personal protective equipment and higher pay, as well as emergency child care and paid leave. Some agencies need to hire more folks and rearrange how they provide services etc. ASAN is also tracking infections, hospitalizations, deaths from covid-19, of people with disabilities living in congregate settings, because we know those settings are so much deadlier than a person's own home. 

Several disability orgs, including ASAN, are partners on the #WeAreEssential social media campaign, which lays out a lot of these issues along with others.

Issues facing Students and Families during this time

Hari, we know covid19 has had a great impact on students and families. Can you tell us about student responses or your thoughts on this?



I’ve been informally polling other peer autistics and their families to find out their challenges. And, as an autistic with high support needs, I experience many of these issues myself as well. 

To start with, this pandemic is kind of like a waiting game filled with endless uncertainty and anxiety. If the abled bodied population themselves are having increasing mental health issues, it’s a multiplier effect on the disabled population. I’m hearing that even kids under 10 are getting prescribed antidepressants. 

In autistics this uncertainty and anxiety can also manifest in so many different ways. There has been a huge increase in all kinds of maladaptive behaviors, whether it's meltdowns, obsessive compulsive behaviors, aggression, self-injurious behavior, disturbances in sleep patterns and other things that add to the already stressful times. 

It's the disruption or even lack of access to support services, therapies and education itself. The remote education model or tele therapy does not work for many who need that physical one on one support and have other needs. I want to quote one parent who says that “only certain people with certain needs qualify for tele therapy.”  Students  who are transitioning between the school and adult programs, like one of my friends, are stuck in limbo with no help at all.  

Many autistics had been working on building independence in community based skills or social interaction skills. Many don’t have the same access to the outdoors or nature hikes as before even for physical exercise. 

Even prior to the pandemic, we as a community have experienced a great deal of social isolation and stigma; this lockdown has given it a frightening face.  Lack of these critical supports, therapies and social opportunities will mean a regression in skills for autistics. 

At the same time, many other skills and behaviors have to be un learned for the current time, such as shaking hands or holding the door open for others. Then there is other hygiene issues - autistics with impulse control issues find it hard to not touch surfaces or maintain a six feet distance. 

Even for those who are able to avail of some form of remote instruction, whether at school or college level, there are big time gaps between the classes, with basically nothing to do. While some have figured out ways to cope, others find this to be very isolating and suffocating. One of my peers says he is “super duper frustrated.”

A bright spot is that some autistics are enjoying remote instruction, where you are free from social interaction pressures. I can just mute my zoom to cut off my stemming noises. Keeping up with social expectations can be exhausting for autistics. 


Wearing a mask has presented another challenge as many autistics have sensory issues. 

Every autistic has a different set of challenges and things that calm or work for them.
 It takes time for families and other caregivers to figure these out. Those with higher support needs rely on caretaker familiar with their needs. During this pandemic the caregiver role defaults to the immediate family for many autistics.  What happens if those caregivers fall ill or if the individuals themselves fall ill. Will healthcare workers even know what to do, how to handle our “behaviors” and other unique needs?. 

Autism is wide spectrum which means that many have health co-morbidities, like seizures and gut conditions. Even during non-pandemic times, many of these go undiagnosed. How will doctors even begin to treat us. 

Many of us will need our support person with us if we need to be isolated or hospitalized. It is a scary thought to imagine being alone in a hospital. I am so happy ASAN, Communication First and other orgs are working on this issue,  That support people be not just be allowed to accompany us, but also be provided the PPE protective gear. 

Some of my peers have needed hospitalization for other issues during this time, which can be absolutely un nerving. 

 I can’t even begin to articulate the plight of autistics who are in group residential settings, especially the larger ones.They like nursing homes for the elderly, are sitting ducks. 



Now for another perspective.  I mentioned earlier that we had discussed autism and covid at the autism class at U C Berkeley for which I am a student instructor. A majority of the class are able-bodied students. What really struck me was the lack of awareness on the part of the non-disabled community. Some of the student responses in my class - from surprise to shock is so telling.  Here are a couple of sample reactions. 

“This entire pandemic is making me absolutely sick about how the disability community is being treated. Dehumanized and devalued. It’s not fair, it doesn’t make any sense”

“The disregard for people with autism, or any intellectual disability, by hospitals in the time of covid 19. It is saddening to see, especially when it is in direct noncompliance with the Americans with Disabilities act.”

“Something that surprised me was how people on the spectrum are being treated throughout covid 19. It actually makes me so upset that people need just as much medical attention as those that are being affected. Just because we are having a pandemic does not mean the normal life things just suddenly stop.”

The point I want to make by showing you these student reactions is that we need to work even more vigorously on awareness of these issues in the mainstream community to bring about change. We need even more allies in the non disabled community. Only then will change be easier and can happen. The current scorched earth scenario is laying bare all the inadequacies of the system. This is like a shocking wake up call of sorts.

What gives me hope

What is giving you hope or resiliency right now?



I am in awe, of the fierce advocacy efforts being done by organizations and individuals to keep our civil rights alive by making noise and lobbying and widely publicizing our issues. We need to make a lot more noise.

This time of need has also given way to so many random acts of generosity and kindness.
An example is the many different online free classes that have sprung up to help us through this hard time. I am able to try out new classes and am no longer limited by having to travel to a remote location amid traffic  to try these things.

Our new normal has meant that many of what we thought had to be social norms are no longer applicable. You don’t have to sit in a cubicle from nine to five to be able to hold down a job for instance. You can turn off the camera or the mic on your zoom if you want. You can choose to be heard and seen. 

I am also encouraged at how greener our earth is getting in just such a short span of time. Just cutting down traffic can have such a huge impact on our air quality. It gives me much hope that we can do something about climate change. And with people in lockdown, the animals are finally getting to enjoy the outdoors in peace which is again telling of their oppression. 

I am in deep admiration that many in the disabled community are not just helping out each other during this time but also participating in the greater community good, like making masks for healthcare workers.

Our strength of character and resilience is shining through. And that gives me so much hope for now, and the future.

A Call to Action

We have enough time for each panelist to make one call to action.



This has been a tremendous wake up call of sorts for all of us.

 I'll keep this call to action very short with ASAN’s big ask right now. 

We really really need people to call, to email, to tweet your congressperson, and demand funding for home and community based services. 
autisticadvocacy.org/2020/03/action-alert-covid19-relief/



Additional Audience Chat Comments
Fantastic insights indeed Hari. Thank you so much for sharing
Thank you Hari - great insights!
Thank you Hari for your positive words of hope.
Great insights Hari. 




Member of ASAN Board

It's confirmed. I'm a member of the ASAN board





==========

When I got asked by Exec Director, Julia Bascom,

 it was a resounding yes from me

https://autisticadvocacy.org/about-asan/leadership/

As Julia Bascom says on her Twitter - she is taller than everyone.


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